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12/31/2010

On Friday, January 1 2010, I began a project of taking a photo a day for every day of the year. I decided to do this because as my kiddos were getting older, I noticed my photo albums were getting slimmer. Besides, I wanted a project that would FORCE me to look at something in my day that was 'photo worthy'. I am so glad I did.

Did I actually take a photo every day of 2010? Sadly, no. I wanted to! But life happens and, for example, just 29 days into the year I simply forgot to take a photo. I almost scrapped the project due to the mistake, but instead decided to acknowledge the misstep with a 'blank' insert and move on.

Some days I took several photos and found myself frustrated with having to choose just one (or two or three) .

Other days I took a couple extra photos to use as insurance for future brain farts.

Then came the days and weeks following Ellie's T1 Diabetes diagnosis and life was just a whirl of craziness. I spent quite a bit of time staring at the wall, trying to regroup my thoughts in order to move on to the next task at hand. Life was too complicated to think about my silly project. I questioned then if I should stop taking photos but I didn't want to throw away 3/4 of the year. Instead, I 'put my big girl panties on' and took a photo of that wall I had been staring at. You'll see it was used more than once, I am afraid.

Most days, however, I saw something beautiful, remembered my project, and grabbed my camera to capture the moment . . . . just what I set out to do in the first place.

Maddi asked me the other day if I was going to do it again for next year. She has made it a habit to ask me about the photos from time to time and I have enjoyed sitting down with her (and Dave, Ellie & Ben) to look through the 'album'.

I can confidently say I will not be doing another year in photos, but you can bet something else will be in the works.

12/26/2010

One of the very fun things about being the mother of a child with a chronic disease is figuring our how to get the most medicine and supplies out of a thin wallet. When I first began researching diabetic supplies, I found quite the variety of both kinds and price points. While I would love to go off on a tangent about the fat cat companies making big bucks off a fricken' test strip, I will refrain in order to keep the language of this site PG . . . ish.

My research revealed the lowest cost available was through our insurance provider's 90 day mail order service. I pay the same for a three month supply through the mail as a one month supply through our local pharmacy. Perfect, right? Sort of. What you save in money you pay for in time and s-t-r-e-s-s.

An example of filling a single prescription

1. Call the 800 number, listen carefully to the menu, take a stab in the dark at what option you need, then press the # button repeatedly until you get a representative on the line.

2. Explain you would like to set up a new mail order prescription.

3. Try to make clear why your 8yo daughter cannot order her own supplies. Repeat over and over until the nice lady stops asking to speak with the person who needs the prescriptions filled.

4. Give the rep all of the necessary information, listen to her repeat the information and confirm the order is right.

5. Hop on the computer so you can track the order to completion and see when it will ship.

6. Scratch your head in wonder as the order sits in 'pending status' for days.

7. Call the 800 number again and repeat steps 1-5.

8. Call your endo's office, beg and plead for them to call the 800 number to

speed things along.

9. Repeat step 5.

10. Begin to adjust the budget in order to pay full price for some insulin as your daughter's is now getting very low and you thought this process would be complete by now!

11. Repeat steps 1-4, hop on the computer and and sing with joy as the status updated to 'approved'.

12. Pray

13. Hop on the computer and practically pass out with glee to see the package is on it's way!!!!

14. Stalk the FedEx website and watch the package make it's way to your front door.

15. Tear open the box as if you are 5 years old and opening a Christmas present.

16. Gather the children around so everyone can play with the dry ice and bubble wrap. Wow! I never knew insulin was shipped temperature sensitive!

Time from first phone call to deliver = 9 days.

I make a mental note of the time it took to save all that money and decide to start the ball rolling a little bit earlier for next time.

Fast forward to the Monday before Christmas. I need to re-order Ellie's prescriptions, but have set up a nice cushion of time in order to allow the mail order service to run through the above scenario a couple of times over. I have a couple of changes to make now that Ellie is using a half-dose pen so the insulin order is technically a new one. Besides, it's Christmas week! They will definitely need more time with the rush of the season, right?

﻿

I place the order pat myself on the back for a well thought out plan of action.

The week progresses quickly as we pack up to leave and travel for 4 days. I don't even bother checking the computer . . . I am on vacation, after all.

:: News Flash :: Diabetes doesn't take a vacation.

Thank goodness for boredom and the circumstances that lead me to hopping on the computer and checking the status of the order, because it was Christmas Eve morning and Ellie's insulin was on it's way to our front door.

We were in another state.

What? How? So soon? No way!!!!! AAARRRGGGGHH

So, I do what any other person would have done; I called my BFF and see if she can go over to the house, take the package home and put it in her fridge.

Except that wouldn't work because the package required a signature and we didn't know when, exactly, it would arrive.

Hubby called FedEx and was told it may not even get delivered because it was such a busy delivery day (duh) and the insulin could possible be left to sit in the FedEx warehouse until Monday. Which, since the package materials are temperature controlled, the shipper may determine them "useless" if not delivered that day. Um, that's 3 months worth of insulin that could go to waste?

Not acceptable. I needed to save this insulin.

One last ditch effort was made and through the magic of online people searches as we located the telephone number of our next door neighbor's house. I called and asked our neighbors to go and leave a note on the front door of our house requesting the FedEx delivery person go to their house to receive the package.

Not even 2 hours later our neighbor called to say the insulin was delivered, unpacked and safely stored in her fridge. She did feel bad about having to lie to the FedEx guy, though. Apparently he needed a signature from someone IN our house. She told him she was feeding our cats (not true, a friend of Maddi's was doing that . . . . our neighbor doesn't even have a key!) and was going to go over in a little bit. HeHe. The FedEx guy gave her a wink and handed over the package.

Phew. Crisis averted, insulin saved.

I assured my neighbor her lie was cancelled out by ensuring a cute little girl got her life-saving insulin. She agreed.

12/21/2010

I just finished reading a post by the painfully beautiful Meri over at Our Diabetic Life. It wasn't so much what she wrote, but how it made me feel after reading it. It made me r-e-f-l-e-c-t-i-v-e.

The phrase "Focus on the journey, not the destination. Joy is found not in finishing an activity but in doing it" by Greg Anderson is one of my favorites. Those words often have the power to knock me out of a bad mood when I am stuck in a rut of negative thoughts.

As I am reminded of these powerful words, I feel motivated to spend some time in thought about the changes our family has gone through over the last year and remind myself how much joy was had in the journey.

A couple of years ago Dave and I wanted to put some thought, time and humor into our annual Christmas card. What started out as a small project turned into a wonderful day with the kids and each other. The memory, not the resulting photo card, is what remains in my thoughts.

And while last year's card did not actually feature a typical photo of all of us, the process of coming up with the idea and making the Mii's was a memorable time.

2009 - front

2009 - back

This year was no different. A few months ago we began brain storming about what we wanted to do. The kids all had and suggestions, however not nearly enough of the ideas were feasible. But that's not the point! The process of talking through it all is a great memory just in and of itself.

2010 - outtakes from our 1950's Christmas by the Piano﻿

We ended selecting a folded card that looked like this:﻿

Many of you have already seen these images, or have received a card in the mail, but I am just so happy with how everything turned out that I had to share one last time.

Gathering the clothes from Goodwill, borrowing accessories from others, begging the talents of a wonderful friend and lay photographer, setting up the scene and laughing with the kids as we coiffed their manes all 50's style was so much fun. Maddi even has a Bumpits hidden on her head thanks to another resourceful friend.

The point is, we had a blast that day and even if the photos had not turned out perfectly or the end product was not when we had envisioned.

Joy was had by all.

Merry Christmas everyone!!!! I will be away from the computer (hopefully) and enjoying time spent with my family and friends.

12/17/2010

I have hemmed and hawed about presenting and writing about this situation and asking for advice from the DOC (Diabetic Online Community) because I have a suspicious feeling the answers and suggestions will be biased.

Why?

Because you love me ;). And because I read all your blogs and know you are caring, compassionate moms and dads and individuals who are adamant and passionate about the proper feeding and care of T1 diabetes.

So,

I am going to present a hypothetical situation and I ask you respond with advice, suggestions and opinions based on not knowing the family involved.

Answer from your heart and experience, please.

HYPOTHETICAL SITUATION

Biddy, an 8yo 3rd grader, is diagnosed with T1 diabetes in late September. She demonstrates immediate responsibility by pricking her own finger and administering her own insulin by injection from the first Dr. appointment and on. Her parents adjust to the new way of life with bumps and bruises, but with the help of family, friends and an online community, they are getting along quite well.

Biddy's school is fabulous. They have a full-time nurse, experience with another T1 student and her teacher is comfortable with Biddy's care plan. Everyone is on board and an open door policy both allows and encourages the parents and school to develop an individual action plan for Biddy.

One day Biddy brings home a note from school with information regarding a field trip with her class to attend a play, off campus and out of the city's limit. The school will provide bused transportation and admittance into the Civic Center for the performance. No chaperone's are requested.

The mother happily signs the permission slip and proceeds to contact the school, requesting she go along with the class so she can provide medical assistance for her daughter. The school nurse will not be attending, nor will any other T1 diabetic trained persons be on the bus or at the show. The school agrees to let the mother attend the performance, but she is requested to drive herself and meet the group there.

The mother is happy to be able to go, but wants to ride the bus with her daughter. The school would like Biddy to carry her supplies and self-treat if feeling 'low'. The mother questions whether it is safe to self-check a blood sugar on a moving school bus filled with loud children. The school nurse states Biddy will not need to check her glucose, just treat for a low.

"Isn't the first rule of a 'low' to get help from another person because the symptoms of the low itself render the individual impaired to make a good decision?" asks the mother.

Back and forth goes the conversation between the school and the parents. The parents want their daughter to feel secure that Mom is there to help if needed. The school insists Biddy is old enough to follow a care plan. They want the experience to be educational, and for Biddy to be able to "grow" and be independent. They insist this is an opportunity for Biddy to be responsible.

While the parents agree on all these points, they remind the school Biddy IS independent in much of her health care needs, and while she has shown great intuition at reading her body's signals for blood sugar imbalance, it doesn't mean she will be able to do it 100 percent of the time. They also point out it has been less than 3 months since diagnosis and Biddy is still in the throws of the 'honeymoon' phase of the disease.

Besides, the parents are seeking a balance between responsible self-care and still being a child. The nature of a T1 diagnosis already strips the child of a care-free life, and responsibility pours on them quickly and swiftly. The parents want to provide Biddy with support AND freedom.

The mother also is quick to point out to the school that she is not intending to set a president, or be 'that' kind of mom who hovers and can't 'let go.' Besides, she feels she is offering for the school to release all liability for this trip, allowing the teachers to be available for everyone, not just focusing on Biddy's medical care. Mom will be there to do it tend to her daughter's needs.

Arguments persist. The school states they are fine with Mom attending the plat, but feel it is not necessary for her to ride the bus. (They state it will only be a 20 minute ride there 20 minutes back ....... Mom and Dad think that is plenty of time for a medical emergency). Mom and Dad decide it is all or nothing. Either Mom is allowed to attend the event AND ride the bus in both directions or Mom signs Biddy out of school for the duration of the field trip.

In the end, the school agrees to allow Mom to ride the bus. Reluctantly. By the sound of the voice of the nurse, they are not happy with the decision and feel pushed to go against the district rules.

The family is satisfied with the outcome, but Mom feels like a target is now on her back and she is not exited about showing up at school for the field trip knowing people are unhappy with the decision.

Finally, Mom and Dad discuss the situation later that night, and decide it is time to write a 504 plan.

12/15/2010

It has been quite awhile since I have done a book review, and coincidentally I just finished reading a book worthy of discussion. This review will be started and completed in one post, unlike my 7 post drag-on session from last February about Michael Pollen's Food Rules. I felt a need to draw attention to so many points in his book because I so badly needed to hear them over and over again. While our eating habits as of late have not matched the glorious whole food, in season meals of this past summer, the information has stuck with me and the desire to adhere to healthier eating is still very strong.

Now my focus has switched from following Food Rules to counting carbohydrates. Pre-packaged foods have slowly made their way back into my fridge and pantry, much to my chagrin. Some days our meals are chock full of preservatives and unpronounceable ingredients, but at least I know the carb count and can properly bolus insulin for Ellie. In the big picture, this time of adjusting to T1 diabetes is short. I still hold dear my vision of eating straight from the garden, homemade bread fresh from the oven and a pantry full of ingredients, not pre-made food items. ::sigh:: I'll get back there again; someday.

Now, back to today's book review, which has nothing to do with food and everything to do with learning about diabetes. I discovered this book while researching T1, and immediately placed a purchase request for my local library.. Last week I was notified the book was in and it was already on hold, waiting for me to come and pick it up. I Love my local library!!!!!

It is 1919 and Elizabeth Hughes, the eleven-year-old daughter of America's most-distinguished jurist and politician, Charles Evans Hughes, has been diagnosed with juvenile diabetes. It is essentially a death sentence. The only accepted form of treatment – starvation – whittles her down to forty-five pounds skin and bones. Miles away, Canadian researchers Frederick Banting and Charles Best manage to identify and purify insulin from animal pancreases – a miracle soon marred by scientific jealousy, intense business competition and fistfights. In a race against time and a ravaging disease, Elizabeth becomes one of the first diabetics to receive insulin injections – all while its discoverers and a little known pharmaceutical company struggle to make it available to the rest of the world.

Relive the heartwarming true story of the discovery of insulin as it’s never been told before. Written with authentic detail and suspense, and featuring walk-ons by William Howard Taft, Woodrow Wilson, and Eli Lilly himself, among many others.

The book was good. Not the easiest 'read' for me, as I love a well written story and this was much more along the lines of historical reporting. I do, however, want to share some things I found particularly moving and interesting. Don't worry, I won't spoil the ending.

PROLOGUE: page 1

"In 1918 an eleven-year-old girl stands in the kitchen of her family's elegant townhouse gulping water from a glass with such ferocity that it runs down the sides of her face. It is her sixth glass."

::Thud:: (the sound of heart dropping down to my toes) At this point, only 38 words into the book, I wondered how far I would get. Tears were streaming down my face as I pictured Ellie standing in front of my clutching 2 water bottles just 3 months ago.

PROLOGUE: page 2

"Aretaeus of Cappadocia, a celebrated Greek physician, (circa second century A.D.) coined the term "diabetes" after the Greek word for "sieve" because the symptomatic incessant thirst and urination made the body act as a sieve."

Spot on definition if you ask me.

CHAPTER 23: page 156

"Her diet (Elizabeth Hughes - prior to insulin) was 45g of protein, 56 grams of fat, 12 grams carbohydrates, for a total of 750 calories for four days of the week, and then two days before her fast day the carbohydrates were reduced to 10 grams."

This was based on a 2200 calorie a day comparison! If the family and patient were willing to extend the life expectancy of a newly diagnosed individual (11 months w/ no treatment) they were to follow a strict diet developed by a Dr. Frederick M. Allen, also known as the 'starvation diet.' The book notes that Elizabeth Hughes was 5'1" and ~45lbs just before the first dose of insulin became available to her.

CHAPTER 28: page 198

"Is that insulin" she whispered. "Yes," he whispered back. He swabbed her thigh with alcohol.She watched him fill the syringe.Just before he injected her he asked, "Will you promise me one thing, Miss Elizabeth Hughes? Will you promise me that if you get well - when you get well - will you grow up to be whoever and whatever you want to be and you won't let anyone persuade you to do or be something or someone else?"

I love this Dr. Frederick Bantang. Not just for his discovery, but for what he knew it would do.

CHAPTER 31: page 235

A Dr. Joslin describing witnessing the post insulin resurrection of starved children in terms of what he called the "Banting Chapter" of the Bible (Ezekiel 37), which reads:

The hand of the Lord was upon me and set me in the middle of a valley; it was full of bones and He said to me, "Prophesy to these bones and say to them, 'Dry bones, hear the word of the Lord! I will make flesh come upon you and put breath in you, and you will come to life.'" So I prophesied as I was commanded and the bones came together but there was no breath in them. Then He said to me, "Prophesy to the breath; prophesy, son of man, and say to it, 'Come from the four winds, O breath, that they may live.'" So I prophesied as he commanded me, and breath entered then; they came to life and stood up on their feet.

How can I comment on this other than to whisper a prayer of thanks for His perfect words.

If you love to read history books, place this one as your 'next to read.' Because of the genre I wouldn't have given this book a second glance had it not been for the subject matter. Anything I can do to better understand how to help treat Ellie and keep her healthy is a 'must read' for me, though.

I would love to discuss this further with any D-mom's out there if you have read this book!!!!! just leave me a comment and maybe we can have an email exchange or discussion.

12/14/2010

I like to use the word 'really' when another option would be to ask the question: 'Are your serious?'

I know! I am totally unique. The word-used-as-a-question is only over-used because other people wear it out. True statement; just ask my family!

Today I am in a mood to start most of my conversations with 'really? .......'. Allow me to provide some examples:

"Really? I still have goopy snot stuck in the back of my throat? It's only been like 7 days and 2 million hawky coughs and WAY too many pills to thin it out.

or

"Really? Why does my son have to crawl back under the covers after breakfast and make me into the mean mom be having to raise my voice and sound empty threats about Santa watching. Just get dressed, dude. It's Tuesday. School. Again."

and

"Really? How did I forget to grab 1/2 n 1/2 for my coffee at the store yesterday? I believe it is the reason I went there in the first place!"

don't forget

"Really? I thought you got a flu shot. Sore throat, headache, no appetite, fever . . . . . . crap. You have diabetes, you can not have the flu! Ack. Crawl back under the covers. It's Tuesday. No School for you."

let's throw in

"Really? I just did the laundry!"

just for fun

"Really? What makes you think just because you have a big car, that probably costs more per month than my house payment, you can cut in front of everyone in the school drop off lane????????"

12/09/2010

I shudder to think about going through the first couple of days of Ellie's diagnosis without our diabetes fairy, Stef. You can read more about this fabulous woman and what she did for us here in Ellie's diagnosis story.

Stef's help didn't stop at the hospital. Nope! She brought her daughter, Kenzi, over later in the week so Ellie could watch a 'pro' check her blood sugar and count carbs to bolus for a snack. Kenzi wears a pump, and this was the first time Ellie and I were able to see not only the pager sized computer, but also the tubing, how Kenzi wears it and where it is hooked up on her infusion site.

Kenzi is a beautiful 13yo who embraced the idea of being a 'big D-sister' to Ellie and I will forever be grateful.

The two ladies had also stopped by our local JDRF chapter office and picked up a 'Bag of Hope'

The backpack was filled with lots of literature for us to sift through, but Ellie was most excited about the bear, Rufus. He comes along with a story about how he has T1 diabetes and even has patches on his body to show where to inject and test.

Ellie's Rufus is always beside her while she is sleeping and has become a permanent member of her stuffed animal family.

::fast forward::

This past Monday Ellie came running in the door after school and gleefully announced a that a "new diabetes kid" was in the nurse's office today and she was only a "Kindergartner!".

While I was happy to hear Ellie was excited about a having someone else in the nurse's office to check sugars and take injections, (there is also a older boy with T1 at her school) my heart was full of sadness for the family who now has to make room for this awful disease in their lives.

After probing Ellie about the girl and her situation, I quickly realized this was a little girl I used to coach in gymnastics and I knew the mother and siblings. The problem was, I did not have a phone number or email address to make contact.

So I shot off a quick message to our school nurse asking her to pass along my contact information to the family and let them know I would be available to help out in any way possible with this new transition.

To my surprise, the nurse not only agreed to pass along my information and offer, but she also included this story in her email:

"Amy: I was so hoping that you were coming in today, because I wanted to share with you about how Ellie went above and beyond in helping the little girl today in my office at lunchtime. The little girl was somewhat hesitant about having to take her shot of insulin, so Ellie let the little girl watch her while she did her shot!!! It was amazing to watch………..no words were exchanged……..Ellie did her thing and you could just see the reassurance and confidence in the little girls face that, yes, she was going to be able to manage this diabetic thing.

Ellie will be a teacher someday………….she really has that special touch!

(signed by the nurse)

What a special girl!!! PS: I will pass your information onto the family."

Ellie paid it forward! I couldn't be more proud of my little girl!!!! (and yes, I totally cried when I read that message. Then I forwarded it to my husband who also admitted to tearing up after reading it.)

Inspired by Stef, and now Ellie, I am heading down to the local JDRF office tomorrow and picking up a 'bag of hope' for this newly diagnosed family. In addition, Ellie is putting together a small treat bag filled with her favorite low carb snacks and a sample of her favorite ways to treat lows. We will deliver the goodies tomorrow after school. I cannot wait!

Yes, this diabetes diagnosis has rocked our world and changed Ellie's life forever, but I can't help but be grateful for the opportunities it has placed in front of us and given us the chance to grow.

12/07/2010

Quick . . . the quote in the title came from the 2nd best movie ever made (behind Princess Bride, of course)

2,754 points go to the winner of the correct answer.

Now, on to the award!

1. Thank the person who gave me this award

Heather is where it started (for me) and Joanne who finally motivated me to get my butt in gear.

2. Share 7 things about myself

- I have chin hair. Yep. Hair on my chinny-chin-chin. No worries, I just pluck 'em out when they stick out far enough to notice. Some are black and some are white but every single one of them is wiry. Why is that? I used to be embarrassed about it but life is too short to worry about chin hair, don't you think?

- When I was young I was once laid down in the driveway and pretended to be hurt or dead just to see if someone would stop their car and ask if I was okay. No one did.

- I am 4'11-and-3/4". Yes, that 3/4 matters!!!!!!! I love being short, though. Except when I am in a crowd. Then I get scared and claustrophobic because I can't see my way out.

- My majors in college: pre-med, physical therapy, exercise science and geology. Degrees = 0. School of life = more than I can count.

- I like smart people. I should be intimidated by them, but I am not. I love to listen to geniuses work through a theory or question. Their body language and facial expressions and vocal inflections are all fascinating to me. They seem to go to another place, unreachable to me, and I am honored to be witness something beyond my understanding.

- I used to think if I could have anything, I would want solitude. Now I crave community, even if it drives me nuts sometimes. Being alone and in your own thoughts for too long is the definition of crazy.

- I always knew Ellie, my 8yo daughter who has T1 diabetes, was going to be a challenge. I just figured it would manifest in the form of a policemen at the door with Ellie standing sheepishly behind him. Now I am relieved it is just diabetes and I don't have to worry about teenage angst. Right? Right.

3. Pass the award on to 12 bloggers you have recently discovered and who you think are fantastic

12/01/2010

Amy ______________ has upgraded her 1997 model pint sized child to a 2010 model fully hormone-loaded teenager!!!!! The trade-in won't be official until 9:44pm tonight, but so far the trade is worth it;)

Yes . . . . it is true. I am now the mother of a teenager. ::shudder::

But, MY teenager if wwwwwwaaaaaaaayyyyyyy cool and will NEVER hate me.

When I knock on the bathroom door as she is getting ready she will never be embarrased by the sight of her mother yielding a camera

And when I call her by her nick name (sorry, I am forbidden to share it with you . . . . however, if someone mentions it in the comments section I have no control) she smiles shyly and says; "Moooooooooooooom"

Yep, I have a pretty neat girl.﻿

So wonderful, in fact, that I requested something VERY unique from Mother Nature.

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Hi there!

I am a Jesus girl, a wife to my high school sweetheart, and a mother to three pretty cool kids. I spend my days as a teacher (we homeschool), an artificial pancreas (my 9yo daughter has Type 1 Diabetes), a friend to a Louise (I am Thelma), a litter box scooper (we have 4 cats), and everything else necessary to live an AWSCHUM life